Over one million Canadians suffer from endometriosis, a chronic health condition affecting more than one in 10 women and people assigned female at birth worldwide.
Endometriosis is a disease characterized by cells resembling the uterine lining — the endometrium — growing outside the uterus, including around the ovaries, the fallopian tubes, the rectum, and other locations. It is associated with painful menstrual cycles, pelvic pain, gastrointestinal and bladder symptoms, and infertility. While the condition is known to have a negative impact on physical and psychological functioning, less is known about sexual well-being among sufferers.
Psychology professor Dana Ménard’s current study of sexual well-being among those diagnosed with endometriosis is funded by Social Sciences and Humanities Research Council (SSHRC) and WE-Spark Health Institute. This study is surveying Canadian cisgender women and those who identify as two-spirit, trans, or non-binary, and assigned female at birth, over 16 years of age, who have been diagnosed with endometriosis by a healthcare professional. These participants are asked to fill out an online survey of about 30 to 40 minutes on endometriosis and sexual health and well-being.
Previous research in this area has generally focused on genital functioning within the context of defects, rather than on a more comprehensive understanding of sexuality. This is also the first study in Canada to consider experiences of endometriosis in people who identify as two-spirit, trans, or non-binary and one of only a few worldwide.
“Sexual well-being has received little attention, despite existing findings clearly demonstrating that some people with endo do report satisfying sexual encounters,” says Dr. Ménard. “There has been little interest in what they themselves might consider to be a healthy, functional sex life and the voices of endo sufferers have generally been excluded from research findings.”
The current project is facilitated by Ménard’s status as a core principal member of the WE-Spark Health Institute, a partnership among academic and community health partners in the Windsor-Essex region. She has also partnered to assist in recruiting participants with the Endometriosis Network of Canada, which offers support groups and workshops for those living with endometriosis.
“The goal of this program of research is to understand sexual well-being, satisfaction, and resilience in Canadians diagnosed with endo from their perspectives,” says Ménard. “The survey is the first step, followed by interviews to better understand people’s experiences.
“We have already started doing interviews with two-spirit, trans, and non-binary individuals with endo, and we’ll be interviewing cis-women in the fall and winter. Down the road, we’ll be sharing our results with sex educators and health-care professionals who work with people diagnosed with endo to provide interventions that will support their sexual well-being and, in so doing, their psychological and relational health as well.”
Over time, the results from this investigation and subsequent studies will be helpful to the millions of people who live with these conditions and want to improve the quality of their sexual experiences, and in turn, their quality of life.
For more information or to take part, contact the UWindsor Endometriosis Study at endostudy@uwindsor.ca.